I was officially diagnosed with pyroluria (also known as pyrolle disorder) in December 2016. This was after two years of having horrible intestinal issues, panic attacks, and daily anxiety, based on nothing. I wrote more about all the symptoms I experienced, and how I got diagnosed here

For those of you that don’t know what pyroluria is, it is a metabolic disorder. In people with pyroluria they create an abnormal amount of krptopyrroles. Also called pyrolles. Kryptopyrrole binds to pyridoxine (vitamin B6) and zinc and makes them unavailable. For a more in depth explanation you can read more here

It has now been three months since I started treatment and WOW, I don’t even know if I will be able to put my feelings into words here…. Well, let me try…… I FEEL FREAKING AMAZING!!!!!!!!

My stomach/intestinal spasms are gone! It is amazing how my stomach pain isn’t ruling my days for me. I’m no longer in the bathroom all morning doubled over in pain. Having what feels like birth contractions. My panic attacks, are 99% gone. I think I’ve maybe had 1 mild attack in the 3 months since I started treatment. My anxiety is sooooo much better. I’m not waking up every morning with horrible/scary thoughts racing through my mind. I’m not getting in the car with my family and feeling like everything is overwhelmingly loud and fast. My kids voices aren’t driving me nuts like they were. I’m having more patience and I’m seeing more and more of ME again.

Here are a few examples of things that have happened lately that have shown me that treatment is working:

Last month, I came down with the cold/flu. I literally felt awful with flu symptoms. However!!! When I took myself to urgent care, I didn’t have a intestinal spasms, anxiety, or panic attacks. Which wasn’t my norm. I literally sat there in the waiting room and was like “Meh, I’m sick. They will give me some medicine and I’ll be on my way” I wasn’t fearing the worst. I wasn’t super focused on how my stomach was feeling every second. I wasn’t afraid I was going to need to run to the bathroom and sit there with spasms and worry I wasn’t going to be able to leave the bathroom for 15-30 mins. I wasn’t having that feeling like my hands were sweating, that I was hot, that I was going to pass out, or that my heart was racing.

In January, my husband and I had a crazy idea to get a puppy!! Keep in mind this was also during the same week we were having some work done on our house. 1/4 of my house was literally draped in plastic for a week with workers coming and going, and I was having to potty train a puppy. While I was a bit stressed, I handled it beautifully. Honestly I think I was less stressed than my husband was, and he was at work most of the day. And I must add….. man I love this little puppers!!

Another big improvement is I’m not feeling freezing all the time anymore. I was literally walking around my house wearing gloves, and a scarf from October – December. Even when we had the heater running. The other night I was laying on the couch and my husband walked up and covered me up with a blanket. I looked at him and said “You’re never going to believe this, but I’m not cold.”

So what all have I done to treat pyroluria? First off I took the urine test from DHA labratory. After I got my results that showed elevated pyrolles, I made an appointment with one of my most trusted doctors, Dr. John Catanzaro from Health Coach 7 He started me on P5P, panothanic acid, and nicinamide, and Opti-Mag. Then he recommended I get my copper/zinc ratio tested (also available through DHA labs). My zinc came back low and my copper was high. So Dr. Catanzaro started me on zinc and Alpha-Ketoglutaric Acid. Also some manganese if I started having copper dumping symptoms. Which I did have in the beginning.

I have been on this protocol and WOW does it work for me! The spams are gone, the anxiety is gone, and so are those awful panic attacks. Life is good!!

Thanks so much to Dr. Catanzaro at Health Coach 7 for literally giving me MY old self back.

Hi. I was just diagnosed and my Kryptopyroluria levels were 31.5 which is even higher than yours-yikes. I was so excited to finally understand what had been going on in my life all these years but also nervous about treatment. I am on 250mg of vitamin B6 which seems a lot. I research and overdosing on b6 can be very dangerous. I see you are on P 5 P but not B6. I am also on P 5 P as apparently it is a different type of vit b6.
I also have another question. Did you just go straight in to taking all of your vitamins straight away or did you spread out dosage over the weeks? I have gone all in and worried that it is too much for my body to handle.
Obviously still in anxious Pyroluria mode lol 🙂
Thanks

Sarah – so glad you got diagnosed and are receiving treatment. Yes I have never taken B6. It has always been p5p for me. P5P is what B6 turns into. So it basically takes that step out for the body to do. I remember I started P5P first and then some zinc. Zinc was hard for me. I had to start with a very small amount and work up or I got bad copper dumping symptoms. I would start 1 at a time. Currently I just take p5P, magnesium, and CBD oil. I am in a wonderful place now. Sometimes I actually think “Wow my body should be having a panic attack right now” but it doesn’t . Don’t get me wrong, I will still get nervous about things and have anxiety, but no where near what I was dealing with prior to diagnosis. I can function again and enjoy doing the normal every day things again with my family <3

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